Ellice Mol

@e-mol

Information about cerebral ataxia together with bilateral vestibulopathy and peripheral neuropathy please. How instrumental is the atrophy within the cerebellum to the vision distortions and walking difficulties?

Thanks for your comment. Sorry for the confusion. The image does look like it is on the right. However the MNI coordinates for this cluster are x = -49, y = 1, z = -23. We’ve altered the image above to better show this.

The most likely explanation for the spasticity is the reduction in descending inhibition of the spinal motoneurones from higher centers. We know that we can increase the size of our knee jerk just by pulling our clasped hands apart immediately before the tendon is struck (the Jendrassik manouevre). This is believed to be due to withdrawal of the normal descending inhibition of spinal circuitry. So, our spinal motoneurones are normally kept in check by the brain – withdrawal of this influence following a spinal lesion thereby increases spinal excitability.

I can see that today’s post is somewhat related to this post last week. But wonder why the two are not more heavily linked. I have a brother who has suffered a stroke but is not paralysed at all. However, he can neither read nor write, therefore cannot use a computer and cannot watch television very long and it is too passive for him anyway. I was thinking that the Nintendo Wii might be enjoyable for him, but if it is ALSO beneficial, more’s the good.

They say dance is an art which is generally related to the movement of the body, the form of expression or social interaction. Who fits this category more that the talented and creative dance group, Justice Crew. What an awesome experience it must have been. The boys bringing their upbeat dance movements and friendly nature to an hard working team. It seems the staff at the research centre have now adapted a good sense of rhythm. Well done Connie, for bringing the fun and joy into the workplace.

I do believe all of the ideas you’ve offered in your post. They are very convincing and will definitely work. Nonetheless, the posts are too brief for beginners. May you please prolong them a little from next time? Thanks for the post.

We’re a group of volunteers and starting a new scheme in our community. Your web site provided us with helpful info to work on. You’ve done an impressive process and our whole neighborhood might be grateful to you.

Thanks mum, I hope with you that many clinicians will use this app in their clinical practice. There is growing awareness among health care providers that fear of falling is dysfunctional and many ask their patients about it. We hope that our iconFES will provide clinicians with more detail about the level of fear of falling of their patients in a variety of situations.
Kim

Thanks dad, our iconFES can be used as part of prevention programs as well. Fear of falling interventions often rely on guided exposure, where an older person practices activities together with someone else first. In order to do this effectively, it will be crucial to identify those activities and different circumstances that concerns people. The iconFES can help clinicians (and researchers) to identify and target the circumstances during which their patient is most concerned about falling.
Kim

Great achievement Kim !! We are proud to read this and proud to have such a great person in our family (Kim is our nice). We hope that in the future many old people will get access to this app. Available in Belgium too ?
Francine & Christiaan and Bert from Belgium – xxx
PS: dit is pas een verrassing hé Kim

The app should be available all over the world. The app detects the language settings of you iPad and, if available, will translate the iconFES app straight into your language. So far, it is available in 5 languages (English, Dutch, French, German, Brazilian-Portuguese) but we are working hard to make it available in many more languages.
Kim

Dear Simon,
Thank you for your interest in using our app. We are currently conducting a longitudinal validation study using the iconFES in over 400 people. Cut-points will be defined using data from this study – expected by mid 2013. Users of the app will be notified of these cut-points with an app update notification.
As for now, the app can be used to identify activities that the older person is concerned of, by clicking on each response category in the “Results Breadkdown” (last page of app).
Best regards,
Kim

Note: In ‘Settings’ (of your iPad), it is also possible to change the 30-item iconFES to a shortened 10-item iconFES.

Wow, what a wonderful experience for all involved, would have loved to have been there and taken part myself and also meet the Crew. Your a very lucky girl Connie and to all staff keep up the great work.

What a brilliant opportunity Neuroscience was able to experience. Everyone loves a good distraction from time to time but having Justice Crew visit the work place and teach you the BOOM BOOM – what an exhilarating experience for all. I too hope to win a competition like this…that’s great advertisement for both; Justice Crew and Neuroscience. Keep up the great research.

Boom Boom by Justice Crew was an enjoyed by all who took part in the days event. Not only were Justice Crew great with their song and dance moves, they were lovely gentleman. I wish you the best in winning competitions also in the future. We at Neuroscience will keep up the good work.

What an amazing experience for you all. I also would have loved to be there and join in on all the fun! Everyone needs a break from their day to day routine and this definately would have spiced up the workplace. Well done!

BOOM, BOOM — What an exciting experience that science meets pop culture. This is one of the perfect examples that NeuRA being a science institute characterised by an open-minded atmosphere. Good on you, Connie for bring fun to workplace!

Hi Jac,
BOOM BOOM indeed! Wish you were here on campus to have enjoyed the vibrant fun-filled day! I know you would have been right into the dance and laughter experienced that day! Hope you to see you back at Neura soon!!!
Thanks, it sure was a great example of science meets pop culture.

I LOVE THIS SONG!!!! i’m so jealous. I wish i worked at neuRa so i could be a part of it and learn to dance like justice crew. Connie congratulations on your win it was an amazing prize and the staff at neura are so priviledged to experience this opportunity in their work environment.

Thank you Nat. The song is great as with the boys from Justice Crew. I wish you were able to have joined us on the day. It was both fun and great for us all. It was an experience to treasure. Thank you for your kind words.

What a great opportunity for a workplace, especially one that does such inspiring & meaningful work!! Also great to see that entering a competition CAN sometimes result in a win!! Who would have thought these 2 groups coming together would result in something so great – nice work!

Great article and great work. I know there are over 100 dementias, but wondered if comparison could be made with Posterior Cortical Atrophy (PCA) or, as it is commonly known, ‘Bensons Syndrome’ – a variant form of Alzheimer’s – which seems to disproportionately affect overachieving midlle aged women (early onset). The need for early diagnosis is especially critical beacuse, by the time they are eventually diagnosed, their brain can be so damaged it is difficult to determine where it originated – and it is then all too easy to just lump them into the Alzheimer’s basket.

Hello, I am Chontell’s great Aunty, her mum Colleen was my sister.
my father Bert Maher passed away in 1960 with this disease we were told then it was Huntingtons Disease. I guess I have been the fortunate
one as now 70 have not displayed the symptoms of this sad disease. I do not what more to say only I am so grateful for Dr Bill Brooks and his team, if only we had had this when I was younger it may have saved me a life of worry, sadness, heartbreak and sorrow just to have the support he is giving those people now. God bless and thank you

Hi Scott, don’t know if you remember me, but I came to your presentation (Ageing & Neurodegeneration) back in August 2013 with another lady called Laila. Unfortunately my sister Maureen passed away from MSA last April but I am still committed to raising awareness about this horrid disease. I believe Glenda has some involvement with Prof Wenning’s MDS Global Study Group – hope it is starting to progress, especially here in Australia. Just read your latest article on the Lipid Pathways in MSA as well as your “thumbnail” on MSA, which I will put a link on our Australian/New Zealand Facebook page. If interested, I am sending you an invite to join this facebook page which is a “closed group” for those involved with MSA. Thank you for all the research you are doing on MSA – it is very much appreciated. Regards Linda Williams

My husband is into his 3rd year of MSA sickness and this article really gives hope for the sufferers and their families. Thank you and I hope with this finding an effective treatment can be found to cure this horrible sickness.

This looks like a promising way forward to understand the basis of mental illness and the commonalities between the various diagnosis. Good work. Our family would be very interested in findings in this area of research. I wonder, though, what roll physcial fitness and exercise also plays in buiding resilience.

This ties in with Ellen Langer’s (of Harvard mindfulness research fame) findings where she took elderly people and exposed them to the environment, politics, music etc. of their youths and they became healthier and their brains “younger” in the process. The same has been done with training elderly people to juggle etc., each time finding characteristic changes in brain scans that really are only explicable if one accepts the fact of neuron growth, given the right stimuli, at any age.

Hello Sam, I’m sorry for your dad and your family. This is no doubt a disaster, and I can understand your feeling. If I were you, I wouldn’t think much about what’s going to happen in the future. I will just treasure this moment when my father is still with me and this family. Cheer up! It will be all right.

Hi Sam , do believe me when I say this he would be very proud of you writing such a detailed (of your experience) account .my husband is 65 now with FTD diagnosed 2007at 58 ‘.unfortunately it’s true what you said everybody forgets It’s different ??
The blank looks delayed reactions ,unfortunately they are in nomans land at times if only we cook see & hear what’s going on in this state. Your mum’s very lucky to have you by her sidewalls very best for you all Annette

and sometimes some parents already satisfied when their child put on their seatbelt without notice if they’d use those seatbelt properly and known the importance of using an seatbelt while driving or just want to make their parents not too fussy. I really think that we, parents, should take more attention on this thing

Hi Martin,
It is a great topic and thanks for organizing it. “Acceptance” has growing body of evidence. Using what I learnt in the Explain pain 3 course when the concept was introduced in patient care has improved the patient outcome. They actually feel better and happier and are less worried. Slowly the complain of pain also reduces. More over I am a more satisfied physio with what I am doing or telling my patients. I think this is a great opportunity for all in New South Wales. Everyone should grab this chance to utilize the expertise of Kevin who is really good at it.
Good luck Martin and NeuRA team.

Trini, We really admire you for the manner in which you have grasped all the opportunities that have come your way in such a positive manner. As well as improving the lives of senior citizens with this easy and enjoyable exercise regime you have tried to improve yourself at the same time. To leave our family behind, and to have suceeded in your endeavours in a foreign country in the manner that you have is only worthy of the highest praise.Your family must be extremely proud of you. We wish you all sucess in your Phd. programme, and may you only continue to achieve greater heights. If we can be of any assistance please don’t hesitate to call on us.

I am glad you are curing your schizophrenia. All I am pointing out is mind control & electronic harassment victims has nothing to do with mental illness …unfortunately the society/system does not recognize that there are mind control & electronic harassment victims and thus normally treats/deals with them as if they had a mental illness.

I am very interested in your trials for the Standing Tall Program. We are a group of Seniors 70 to 80 and meet 3 times a week for regular exercises. Approx 8 – 12 people. At the moment we are doing chair exercises to a Rosemary Conely DVD on a large screen and also a Osteo DVd to help strengthen our bones and prevent falls. We live in a Retirement Village in the Northern Suburbs of Perth Western Australia and wondered if you would consider including us in your trials. I tried downloading the Ipad app for my husbands ipad including registering it, but it led us to a hockey website which seemed to be a development site.

Hello. As a Movement Educator currently training in Clinical Somatic Education (a movement education process which involves the sensorimotor system) I am very interested in what you define as sensorimotor training. Please would you elaborate? Many thanks

Interesting to hear and a way forward. I’ve been using sensorimotor training on a background of the individual having a working knowledge of their pain (moment to moment self-coaching: what do I need to think-do at any given moment) for some years.

Hi nice to hear about this research.I am from Brunei. I am at the moment managing a chronic back pain patient using tactile aquity training and mirror therapy. Its just been 2 sessions and wont be able to tell the result at this stage. Hope to see whats the result from your studies on this type of management

What references do you have for these insights? I am not able to fact check what you are writing because there are no references.

I am quite sure that you are misinterpreting insight number 4 as it is not possible for us to predict injury very well in generel and I would highly doubt tweeting information would inform us when we are at risk of having an injury occuring.

Injury is not the same as pain and pain is not the same as injury. This is of course semantics but it perpetuates biomedical beliefs that pain is only due to injury and that pain comes from the body. I would highly recommend you altering the phrasing of number 4 as it is not up to date with current science and does not provide information that is beneficial or valuable to patients nor health care professionals. Giving advice that focuses on protecting the back can actually increase patient hypervigilance and be a part of why they experience back pain. Instead advice focusing on what positives one can do for one self would be a better option.

I have been diagnosed with severe apnoea with up to 70 episodes per hour. I would like to be assessed by your clinic for possible treatment and possibly participate in your research. I am a 65 yr old female in general good health. I can be contacted by email or phone on 0419270359 I live in the southern Highlands of NSW

I live in Brisbane. My husband had a spect scan that concluded he has frontal lobe degeneration. I suspect a gene deficiency in his family. Who and how can I find help to diagnose and advise me on his specific symtoms?
Thank you

-Dennis, I have just read your 2 blogs and realise how much “music and memories” can mean . .As there are a number of carers in the support group I facilitate who do not use a computer I would like your permission to circulate it in print..Your experiences may help others on the journey with dementia of any kind. Thanks. for your prose.
Val Fell

Dennis, you are amazing and so articulate. You are spurring me on to put into print all the memories that I have of my grandparents and my childhood. My grandchildren have no idea about playing cricket down the street using the lamp post as a wicket and not going home until the street light was on and I heard a call from my mum up the street. Great times, great memories.

Love it Dennis. You would be completely at home in our ‘Happy Hour’ sessions. We sing and play everything from 1898 to 1988. Good tunes & lyrics work for everyone no matter their age or ability. Besides my husband is a secret Yes fan and so he deffo has his moments!!

Pleased to have found someone looking into CIPN. For 20 years my wife and I have been strong country walkers covering some 10,000 miles. Having developed CLL Luekiemia myself my life has changed almost completely.
Geoff Prosser.

Dear Sir/Madam
I am a sixty five year old woman who developed Restless Legs Syndrome six months ago which has progressed/intensified and now affects my entire body. Of a night I experience the constant need to move my legs which persists until I finally fall asleep and then on waking a tingling sensation starts in the soles of my feet, my legs, my genital area, my arms and upper body. I also experience little “electric shocks” at night and throughout the day that are similar to the feeling when “someone has walked over my grave”.
Can you advise whether any research is being done into this condition in Australia and in particularly Victoria. My GP and Neurologist seem to be at a loss.

Thank you for your ongoing work, Rebekah. I’ve been observing how my the diet of my partner (living with PPA-L) affects her energy levels, compared with my late partner’s type II diabetes.
Are you planning to do any work on ketonic & low GI diets?

I have been diagnosed with moderate/severe sleep apnoea for several years. I am very compliant with apap therapy because I take a low dose of sleeping medication to keep me asleep while using the apap. I would very very much prefer not to have sleep apnoea so would like to volunteer for any studies or trials you may run or are running.I live in South Brisbane and can be contacted on 0400170100.

This is a terrific blog, Richard. Have you got more? I would really like to hear about some of the insights you might have gained from your phd? I have a close family member who has this diagnosis. I wonder if schizophrenia could be reframed as a word used to describe the way a mind functions sometimes on the far end of a continuum – that it may be, as you mention, an aspect of a ‘normal’ mindset. Could it be that the mind travels along that continuum, or weaves and ducks, maybe dances, along that continuum, with some people staying more in the ‘enhanced reality’ end of the continuum, some in the solid ‘feet on the ground’ end, and many of us navigating realities somewhere in between?

So, three things I wrestle with, trying to find a way to understand and support the person in my life with this diagnosis / extra ability: 1) apparently, our brains, after 12 years of age, begin to trim or contain our imaginative possibilities, shutting down certain synaptic pathways – creative people try to keep these open somehow or another – and our brains (after 12 years of age) develop stronger filters for all of us to help us ignore a lot of information and impressions, which is much more restful than not having the filters; and 2) mystics and prophets and visionaries (as well as doomsayers) and extremely creative people keep their brain pathways open and have been able to see beyond day to day reality for eons, and sometimes are able to change the path of humanity due to this ability, but it makes their lives difficult and overstimulated and confusing, and 3) in the modern academic arts and humanities world, it is well accepted that there is no one reality, that instead, it is suggested that there are a multiplicity of constructed realities we are all constantly negotiating.

Is it possible that if a consistent percentage of people across human history have schizophrenia that it is entirely normal and serves a purpose for mankind, and that, further, it is an ability of the mind that we ALL draw on at certain times? A heightened awareness, a dropping of our filters, an ability to see beyond our usual circumscribed ‘reality’?

My question or quest comes down to wondering if there couldn’t be other ways of perceiving schizophrenia that would lead to other ways of treating it – ie accepting that there are many multiple realities and helping people to negotiate those in a positive way.

In terms of the medications, it seems to me that the meds do not need to be ramped up to the point that they obliterate all delusions. Everyday people have (and maybe need sometimes) delusions, alternate ways of perceiving things. The more important thing to me (as a primary support person) is dealing with the ‘negative’ aspects, ie, the lack of executive functioning – day to day management, decision making, getting on with life. You seem to have conquered that beautifully. I hope you will talk about that in some of your subsequent blogs?

Thank you again for your blogs, and your thoughts, and I look forward to reading more of them – you have given me a lot of hope.

I am a medicated schizophrenic. I also have MDD and PTSD. I am also a medical research scientist by degree. I have had some experience in proteomics, neuroscience and stem cells. Would there be any tasks/ research I can do in any of your laboratories in a voluntary capacity to contribute to society under supervision of course?

Great initiative NeuRA. This is the scenario more or less everywhere- people are not aware that vertigo can be cured by right and timely diagnosis and treatment. Hope your research and treatment enable many people like Lydia to live normal and healthy life.
I completely back you on providing tailored treatment to vertigo-patients and vouch for its results. At NeuroEquilibrium we do provide customised vestibular rehab treatment. I am very happy to acknowledge that patients find it very helpful and recover speedily. The constant monitoring and reviewing the course of treatment empowers both; patients as well doctors.
Great job, Again!

Good reads! I enjoy reading your post. Which means, before your back pain got severe, self medication is not advisable. As I research on the internet, there are many suggestions or activity like exercise to ease the pain. What kind of Doctor needs to consult for severe back pain? Surgery is the last option? Thank you for the great insights.

Dear Richard, thank you for your article and for telling your story. Please, if possible, also tell your father’s friends Ruth ad Henry that I found you, (I met them on a plane from Dallas Fort Worth to Sydney) and that my son Iain has also read your story and found it helpful

I agree with this article and I have found Pilates to be the most helpful for me. I have completely recovered from Failed Back Surgery, Chronic Pain and Complex Regional Pain Syndrome engaging in this very idea.

After losing the use of my hand, arm and the ability to sit because of chronic pain, I was able to regain complete function through exercise. Medication allowed me to start slowly with stretching exercises from my Physio and gentle yoga. Eventually I was well enough to begin rehab with a kinesiologist. She made me feel safe to move in a body I could no longer trust. She helped me regain confidence and function. I now exercise in group classes three times a week. I’m stronger than I’ve ever been. Chronic pain is still here, but so is an understanding of my body and what my nervous system is doing.

9.28.40 ended all honorable critical humane logical thinking in medical science world. The first hip replacement wrongly performed fooled everyone into thinking that people could be fixed with car parts. The idea of a new knee is utterly bizarre

I have a personal interest in the ideas presented in this work (mother-in-law passed away from what was diagnosed as FTD, wife is displaying symptoms of low progesterone for years, but refuses to seek medical advice). Are there any human studies planned or currently being undertaken looking at progesterone and FTD?

I was reading the wiki entry on Schizophrenia and felt totally discouraged by what was written in it.

The wiki entry begins with: “Schizophrenia is a mental disorder characterized by abnormal social behavior and failure to understand reality. Common symptoms include false beliefs, unclear or confused thinking, hearing voices that others do not, reduced social engagement and emotional expression, and a lack of motivation.” wiki, accessed March 2018.

I am particularly concerned that people who read the wiki entry on Schizophrenia are left with the impression that Schizophrenics are “abnormal”, “fail to understand reality”, “have confused thinking” etc. Their is no mention of acute episodes of the illness and normal living with the illness.

And does the WHO still use the term “mental disorder”? Are they doctors using this term or bureaucrats? Why?

I’ve been assessed as having severe sleep apnoea back in 1995. The doctors were amazed i didnt die of cot death and that i’ve never fallen asleep during the day or being violent because according to them, the minimum amount of sleep i got should have driven anyone mad. Since i’ve managed to function ok, the doctors decided we’ll revisit once im older. i would really want to participate on sleep apnoea study.

This was a great read. As someone who has witnessed this physical pain lead to mental pain in loved ones, I can say that it is true. These physical pains, which cause some to be forced to stay at home and live a life that is undesired, can cause depression and anxiety, among other mental illnesses. With the way our brains send signals to each part of the body, it is easy for the lines to cross.

Hi Trish,
The app will soon be available for the public on both apple and android devices, and also computers (through a web browser). The screen size of a phone would however be too small to run the program.
Kind regards,
Kim

Thank your for your work.im 42 and have faught depression since i was 16 .Anxiety, epilepsy, anytime anyone “sneezes” anywhere near me i have a cold, chronic headaches.The work your doing will change lives , attitudes i beleive will take longer , however we can hope.

Interestingly enough, MRI doesn’t reliably diagnose back pain! It might seem counter intuitive but most of the time, MRI scans of the back only show normal age related changes, just like the barber finding a grey hair on your head.

Having read this I thought it was extremely enlightening.
I appreciate you taking the time and effort to put this short article together.
I once again find myself spending a significant amount of time both reading and posting comments.
But so what, it was still worthwhile! Thanks

I have Pakinson’s disease and am under the care Prof Simon Lewis. I have had a number of falls this past six months As such, I would like to be considered to be able to participate in the step training intervention course. I am a regular donor to NeuRa.

Thankyou for sharing your Experience, my wife recently suffered very bad vertigo and reading this article helped with her diagnosis of BPPV, we did the Epley movement with her at home and it cured the vertigo straight away!!

Around 40% of the peoples are facing the spinal problem. The common signs of spinal problems are a headache, backbone pain, neck pain, and fever. While you are facing any of these problems, you should consult with the spinal consultant because these problems can affect your health and can cause serious injuries to your body in the future too.